OMGThat'sWhatTheySaid! -- Language

The following post contains material that could be considered uppity, outlaw, provocative, offensive and paranoid.

This month's OMGThat'sWhatTheySaid Award considers the nature of the vocabulary that we all use for mental illness, in particular, the language that norms the relationship between those who receive a diagnosis and those who make it.

Once upon a time, I wrote a senior thesis for Reed College on this topic. I was a religion major, and it was 1975, when the Episcopal Church was considering the ordination of women. My topic was what priests are called. My thesis was that the language we use establishes the normative relationship between priest and parishioner. I am discouraged thirty-four years later, that new, freshly graduated priests in Iowa still permit and even encourage little old ladies to call these twenty-somethings "Father." Oh well.

In the mental health field, this kind of paternalism is out of favor, perhaps the influence of so many women in the field. But the language has not escaped from reinforcing the power relationship, one up and one down.

I am taking a Peer to Peer (P2P) course, sponsored by NAMI, where we scratch the surface of this topic. The course text notes that every stigmatized group that has resisted oppression has done so by claiming the language, deciding for themselves what they will be called. Invariably, these claims are disputed, whether ladies/women, Negroes/blacks/African Americans, homosexuals/gay men and lesbians. Sometimes the self-chosen word is turned into a form of ridicule. Women became "women's libbers." "Gay" is a high school put down.

Typically, those in power deny the power of their language, or do not take responsibility for it. They cite ancient derivations and precedents, and accuse those uppity people of being over-sensitive, "It's just a word." People with mental illness can expect no less, or even more. Those who have power to diagnose us define us to a public that is nervous about us anyway. They have power to mess with our medications, our disability payments, even our liberty. For example, that sentence itself could be diagnosed as paranoia. Has my depression progressed into psychotic features? Consider, many who are involuntarily committed receive their sentence for something they said.

However, the mentally ill are everywhere, to appropriate another group's phrase. We include among our ranks those who have been through the previous struggles. For me, it was when my employer wanted to know how to phrase the announcement of my disability leave (originally called a "retirement") that I realized, I know the map. So do a number of my peers.

So let's dive into it. Doctor/patient -- See, that could be power neutral, but for the deep layers and long tradition of one up/one down behaviors and the language that supports the existing relationship. Sticking with language, one gives doctor's orders; the other either complies or is called noncompliant. When they do clinical trials of medications, they measure the rate of noncompliance. Who came up with that? Not the person with the diagnosis, who does not take the medication as directed if the reasons are not explained well enough, if the medication is not effective or is too expensive, or if the side effects are intolerable. For all the latter day talk of how doctor and patient are partners in this relationship, if the patient had the power to name his/her own experience, the word would not be noncompliant. It would be dissatisfied.

Moving on to therapist/client. Client isn't so bad, and this one might stick around, if therapists were called by the parallel term, mental health consultants. That would suggest that the client has certain expectations. Imagine an intake interview in which the expectations of both parties were discussed. The consultant has policies about cancellation of appointments and payment of co-pays. Would it not be balanced, therapeutic even, for the client to name his/her expectations, for respect, for discussion of the diagnosis, for disclosure of what the consultant reports to the insurance company and the consultant's peer review or supervision, how confidentiality is handled in such settings, for the consultant's knowledge of side effects, so that problems with medication could be identified as such, and not misinterpreted? How about a regular review of whether each other's expectations are being met? What expectations would you have?

Here is a big one for me: provider/consumer. I suspect the intent of this couplet was to soften stigma and normalize the experience of therapy. But it misses the mark. No consumer invented the word. It is the word that degrades the entire population. We are a consumer society, defined by our usefulness to business. It has become our duty to shop when terrorists threaten shopping malls, spend when business is hurting, and thereby relieve the anxieties of stock holders. They say that the economy is improving when the owners of the economy are making money, not when there are fewer people who live in the streets or beg at street corners, not when all receive adequate health care that they can afford, not when each of us can make a meaningful contribution to the quality of life on the planet.

In the language of mental health providers, our health has become a commodity. Mental health providers deliver mental health services, as mother and father birds drop food into the open mouths of their chicks, the consumers.

Well, there is no turning back the forces of the economy in health care until the whole system collapses. Its voracious appetite consumes us all. So how do we who have a mental illness claim power within the economic paradigm? What language do we use?

This examination of language is a collaborative process which NAMI has begun, inviting peers to participate. Already, NAMI reshapes the language, when it calls people who have schizophrenia, people who have major depression, people who have bipolar, people who have obsessive compulsive disorder, people who have been labeled with a borderline personality disorder, all of us peers. Peers consult with one another, learn from and support one another, and come together to name and meet their own needs. There is power in numbers, power in cohesion. If we can recognize that there is more that unites us (our experience) than what divides us (our differential diagnoses), then together we can act.

And how to name the relationship with psychiatrists? I propose that we are "customers." We purchase the services and pay the salaries of psychiatrists/sales reps. They get their commissions from the pharmaceutical companies. Their commissions are not as big as they used to be, no Hawaiian vacations for those who prescribe/sell great quantities, unless they become the middle men, the doctors who sell the product to other doctors as speakers at conferences. Although ethical issues have been raised about these practices, pharmaceutical companies still supply commissions in the form of research grants and pay for almost all of psychiatrists' continuing education. Really. We pay the salaries. They pay the commissions.

Now let me make my own disclosure . AstraZeneka, the producers of Seroquel, used to treat schizophrenia and bipolar, is the sponsor and funding source for Peer to Peer. At each meeting we sign in, so that the program can report back to AstraZeneka. If attendance falls below ten, then AstraZeneka pulls the funding. I drive sixty miles each Thursday evening to attend this class in the next county, because NAMI hasn't gathered a full class size in my county. Last week we did an exercise. Each person who could state something positive about their medication finished this statement, "Without my medication, I would..." The exercise had its desired effect, as I gave thanks for my medication. So NAMI is part of the sales force as well. And I receive these services gratis.

Back to psychiatrists -- If we are customers, then efforts at compliance become concerns about customer satisfaction. Now the power balance begins to shift.

1 comment:

I began this change in the power structure of doctor/patient long before I was diagnosed with Major Depression. When looking for a pediatrian for my children in the 1980's I arrived at the first appointment with a prospective doctor with a clipboard in my hand. I then proceeded to "interview" the doctor letting him/her know that I was considering her/him for the "position" of pediatrician for our family. This was very effective as it put the doctor in the position of treating me as a peer, not as a subordinate.

I have since used this same techique with the mental health profession to great advantage. So for instance when I was diagnosed with Major Depression in 1993, and google was still five years in the future, my only source for information on the psychotropic medications was from my psychiatrist (and the few books then available on the subject). My psychiatrist's office booked appointments 10 minutes apart, I requested 2 appointments back to back so that I would have 20 minutes in which to have my concerns addressed and questions answered without the pressure of the next client waiting for their 10 minute appointment.

Language is vitally important to how we are treated and how we conduct ourselves in the world. If I arrive at my psychiatrists office as a customer, then I expect to be treated with the respect customers demand in other situations. I expect "customer satisfaction".